Chiari Online Support Group

Tests completed Now the waiting game

Does anyone (adult) suffer from abnormal posturing? This morning I have to be up and on the road at 6:30 to get to my MRI test at 8:00. I just came down with the seasonal allergy crap yesterday. It was so hard to keep from swallowing during the test. But I made it through with no retakes! This morning I experienced about three posturing episodes before I ever got out of the bed. They were so extreme that I hurt ALL OVER! For the longest time I though this was something that I was consciously doing, but now I realize it is not. Just curious if I am not alone. Thanks

Hi,
How are you doing?
I think I might be experiencing something similar but what exactly do you mean by abnormal posturing?
spacticity?
My left wrist wants to assume a certain position sometimes.
If I become aware of it I am able to correct it but if it holds that position for too long it becomes painful.
My surgeon said I have Hyper reflexia on both sides and I think that is the medical term for this
Hope your scans were ok
All Best X

Hey Tara:

I am so glad to hear from someone! It is similar to spasticity. I think. I attached a pic of what I experience. It is mostly when I am asleep or upon waking. It feels like I have to stretch, all my muscles tighten up, and then my back arches. I used to wonder if I was actually stretching and then one day I realized that I am not. I was on my sofa one day and all of sudden I realized that My back was arched and only my shoulders were against the back of the couch. My most recent was the strongest. It is scary. I have also had hand cramps to where they get “stuck”. My thumb tucks into the side and the fingers go stiff in a weird position. My Neuro says this is Carpal Tunnel. I had a nerve conduction test for this last week, no results yet.

Last week was really bad for me. I have a question for you, as you are the first person that I have actually communicated with on this topic. Have you ever had a whole body episode? What I mean is: Body tingling, sweats, and black out vision, although I never passed out. It was the first for me. I was taken to the ER via ambulance. They did not do anything except diagnose me with a severe bladder infection, gave me antibiotics, sent me home. Granted I did have a bladder infection and was dehydrated from the current head cold that I have, but I am 99 % sure that is not what caused my episode.

I hope my info helps you! Good luck. Keep me posted on your progress.

I believe what you are experiencing are called primitive reflexes. They are patterns of movement that originate in the womb and early infancy and typically are suppressed by higher brain systems during early childhood. Sometimes, normal adults retain a few. Those with learning difficulties or developmental delays often experience more. There are about 70 recognized reflexes and I would think that people with Chiari needn’t experience the same ones.

Other populations include cerebral palsy, MS, stroke, dementia, brain injury and other conditions that affect the brain. Some pediatric physical therapists work with treatment for treatment - perhaps others in dealing with stroke or concussion injuries. I am not aware that neurologists study or know how to treat primitive reflexes.

No - they are not woo-woo alternative medicine. They are very specific and highly specialized and the information on primitive reflexes is not free floating on the internet next to essential oil selections. It requires physical assessment and a physical treatment of specific exercises designed to reteach the upper brain to suppress those primitive patterns of movement that were originally designed to assist in early feeding and movement strategies.

I am consciously aware of reflexes that affect my hands, mouth, arms, hips, calves, feet, and balance. The dizziness exercises I have posted on this site are primitive reflex exercises. Not having those exercises properly suppressed can result in that Chiari dizziness that so many people report.

I fortunately found a highly competent physical therapist and course on this assessment and treatment and can keep the spasming at bay. I am due for a full exercise regime once I finish up a few other physical therapy issues.

Ask away if you have any questions

It is a shame that knowledge and treatment of primitive reflexes is so narrow. It has made quite a difference in my balance, teeth pain, leg spasming, and other symptoms.

@corriehouse what you are describing is different from the hyper reflexia that I have.
The first image you have posted is something called Opisthotonus.
Look it up.
I wish you well xXx

@gabby_jazzypants what you have written is interesting. I believe mine is caused by hypereflexia.
The excercises you speak of sound interesting I will look them up